Sharing Locations An Update

[Millidog]

Hi All Friends - I just wanted to say a big thank you to all of you for responding to my post. I do hope through the responses you are able to make contact with others nearby via a post or by using the chat facility and I hope more will continue to add their locations.

Another way of making connections is via the PSPA Carer Zoom sessions. I understand these are set up by region although some of these are quite large geographically they are a great way to meet others in your area and share information or support each other. I have been a bit lax and havent joined in recently but am planning to put this right and will be joining the Zoom session for my region planned for 7pm tomorrow (Tuesday) Hope to see some of you there BW Millidog

PSP Warriors, This forum is amazing for sharing PSP care and support information from people far and wide and I like many others have benefited greatly from this and continue to do so.

Even with this group one can still feel quite alone and isolated caring for loved ones with PSP and by luck I have also found a few local connections via this site and have started to chat and meet individually sharing information about specific area help and support. It's like having your own psp support group and being able to more specifically support, make new friends and gain knowledge of how things operate in the region is invaluable

Someone mentioned recently it would be good if people shared their locations and I thought what a good idea, obviously only if people want to so I thought I'd start by saying I'm in Bridport, West Dorset so if anyone else is around the area do reach out.

Best Wishes Milli dog.

[GB07]

That’s a great idea. Must be so nice to have some local connections. I’m in South West London and help care for my mum who is in North London.

[Sun-flowerwearer]

Hi

My husband and I are in West Devon on the edge of Dartmoor.

[Millidog in reply to Sun-flowerwearer]

Hi, I will be on the Zoom tomorrow, hope to see you there Gx

[Sun-flowerwearer in reply to Millidog]

Ah that’ll be lovely

I do the evening one x

[Vraic]

I'm in Lancashire, near Chorley

[Millidog in reply to Vraic]

I too are from Lancashire but moved to Dorset 3 years ago. I do hope you are able to make local connections via this site XX

[45purple]

Hi Millidog what a great idea. I live in Kelso Scottish Borders. I would love to meet or chat with someone going through the same experience as I do feel alone. This is a fantastic group 💜

[Wigwambob]

It is a very good idea. I have by chance also met someone else caring for their husband with PSP/CBD and we have started meeting. Anyone near Worcester?

[AnnesHusband in reply to Wigwambob]

Hello Wigwambob, we are in Worcester.

[Cake_lover in reply to Wigwambob]

Hi, I am near Worcester, I'm a PSP sufferer rather than a carer. I'm sure my mum would appreciate knowing you are local. (She lives with me).

[Wigwambob in reply to Cake_lover]

Hello there. Sorry to hear that you are a sufferer of this dreadful illness, your Mum must be distraught for you. I am in touch with a couple of other ladies and we meet in the cafétéria of St.Richards Hospice. You maybe could send me her number and I would let her know when we next meet. Take care. Sylvie.

[Bossydaughter1]

Hi Miillidog my mum has just been properly diagnosed after a few years of showing symptoms. We are in Lancashire Poulton-le-Fylde just outside of Blackpool if there is anyone else in the area who would like to chat or has info in relevant groups in the area.

[Millidog in reply to Bossydaughter1]

Hi thansk for responding I too am originally from Lancs and moved to Dorset a few yrs ago. I can see others on here near you so hope you are able to make contact XX

[SEADIVER]

Hi Millidog, there has always been a missing link on our forum and you have filled it with this great idea. I am in with you all. I live in Nantwich, Cheshire and look after my wife with PSP since 2018.

[Claptonfan]

Great idea. We live in Wimborne, Dorset.

[Millidog in reply to Claptonfan]

Hi thanks for responding. Maybe we canb speak sometime, do message me via the chat facility if youd like to. Not sure if you participate on the PSP carer Zoom sessions but I am planning to tomorrow (Tuesday pm) Gx

[AnneandChris]

Whilst our journey is over, I'm happy to offer support where I can. I'm in Tetbury, Gloucestershire. Keep on keeping on.

[Millidog in reply to AnneandChris]

Hi Anne, Lovely to hear from you and I just wanted to add my thanks to you. I have found great value in this site especially from you, Kevin 1, and a few others that were frequent communicators on this page a few years ago. Your knowledge and experience has certainly helped me prepare for changes and in securing CHC . so warm wishes and many thanks GXXX

[AnneandChris in reply to Millidog]

Hello there

How lovely to hear from you too. I often wonder how some of the 'old' guard are, Kevin, GrannieB and yourself, I never made it up to the pub in Victoria!

I was going to volunteer as a PSP Link helper but two arthritic knees are limiting my activities at present. Once they are sorted during the next six months I will review the situation...

Take care, best wishes

Anne xx

[Millidog in reply to AnneandChris]

Hi Anne, Lovely to hear back from you. I hope you keep well. I wasnt one of the old guard just an apprentice who learned so much from you, AliBee, GrannieB and Kevin and hope that I can help others as they continue to help me XXX

[AnneandChris in reply to Millidog]

😘😘

[Bruar]

I'm in Eastington, Gloucestershire would love to meet up and chat to someone.

[Cinema4 in reply to Bruar]

I am in Gloucester and have CBD. Joanna

[AnneandChris in reply to Bruar]

Please do not hesitate to message me if you think I can be of any assistance. Take care

Anne

[Redjune1]

I’m in Grimsby, Lincolnshire

[autex2000 in reply to Redjune1]

Hi, I just recently lost my wife after a very difficult last few weeks, but if i can help I am in Brigg Lincs

[Redjune1 in reply to autex2000]

I’m sorry to hear about your wife , Autex. My husband has psp and is in a care home now .

[Zerachiel]

As you may have read in my posts, we are in Nottingham and go to a PSPA meet up in Leicester.

[Sunshine_Shimmer in reply to Zerachiel]

Hi Zerachiel. Please can you tell me more information about the meet up in Leicester. I didn't realise there were some face to face meetings as well. Thanks in advance 😊 x

[Zerachiel in reply to Sunshine_Shimmer]

Hi, here is a link to the next one, pspassociation.org.uk/event...

[Sunshine_Shimmer in reply to Zerachiel]

Thank you very much! 😊

[Bergenser]

We're on the Herts/Essex border near Stansted.

[Kjupp in reply to Bergenser]

Hi, you’re not far from us. I’ve not found anyone local to us that’s in the same situation.

[Doublereeder in reply to Bergenser]

Not far from you in Chelmsford though Mum with her PSP is in a care home the other side of Cambridge!

[Jimjam22]

What a great idea, I'm in Menston, west Yorkshire, our battle is over, I looked after my mum, who has sadly passed away now.

[Corpen]

Hi,My dear wife has PSP . We live in Gwynedd. This is my first

post but I get so much comfort reading the daily posts.

Diolch

[Tez117 in reply to Corpen]

Would you like to chat more. We are in llandovery

[Kjupp]

We are in Herts, Cheshunt.

[Jen295]

Hi . We are in Cardiff in Wales

[Pspuser in reply to Jen295]

Hi Jen295, I don’t know what stage you are at, but just wondered if you have heard of ‘Dance for Parkinsons’ held in Cardiff and, recently started, in Porthcawl. People with PSP are welcome ( and can remain seated). My wife goes to Porthcawl. There is a seated Tai Chi class held in Barry, which she also attends.

[Jen295 in reply to Pspuser]

Hi PspuserThank you for that information I hadn't heard of either events and also didn't know of anyone in the Cardiff area with PSP. I will mention both to my husband Roger but he's not keen to do anything. He was diagnosed in 2021 and walks with a walker and uses a stairlift. He was never a dancer but did do Tai Chi for awhile during lockdown on Zoom with me via the Maggies centre at Velindre, so perhaps may be interested in that if it's seated. How do I find out about it?

Also where are you? Cardiff,Penarth or Porthcawl?

Take care and Thanks

Jen295

[Pspuser in reply to Jen295]

Hi Jen295,

The link for ‘Dance for Parkinsons’ is ndcwales.co.uk/dance-parkin....

Note it is really just movement, not really dancing.

Some stay seated.

Carers/ spouses can join in.

the tai chi class is run by Motion Control Dance at barry YMCA on a Wednesday. I’m not sure if you need to live in the Vale. I can’t find a direct link for the class, but the website for MCD is motioncontroldance.com/serv....

It’s a small group, usually between 2 & 6 people.

Emma, who runs MCD is very friendly & helpful.

My wife, Judith, was diagnosed last September. She uses a walker or a stick indoors, and can still just manage the stairs (not for much longer I think).

The O.T. advised us not to get a stairlift, so we are in the early stages of converting the garage.

We live in Rhoose.

[Pspuser in reply to Pspuser]

Hi jen295,

I have checked with Motion Control Dance, the class is today at 2pm. You are welcome to attend if you live in Cardiff. The website is a bit of a mess, call them if you are interested 07725 038 778.

It’s a very relaxed affair, four people there today. If nothing else, it a chance to get out for a bit.

Dave

[David750]

I am in Ayr, Scotland

[Millidog]

Hi Sunflower1777, I orginate from Rochdale well Littleborough actually so a Lancashire lass too but moved to Dorset 3 yrs ago. My sister lives in Shaw and I know someone local to her has PSP too as they had a fund raiser in her local pub...maybe youselves or someone else who might be on this site. If I can help in any way do message me via the chat and take care Gxx

[Sunshine_Shimmer]

Hi Everyone my family are in Hertfordshire and Lincolnshire xx

[Pspuser]

We are in South Wales, near the Airport. My wife was diagnosed with atypical Parkinsonism - likely PSP/ overlap of PSP and CBS in September 2023

[Tez117 in reply to Pspuser]

Would you like to connect. We are located Llandovery

[Pspuser in reply to Tez117]

Hi Tez117,

We have recently formed a group of people in the Cardiff - Bristol area in order to meet up for a coffee and chat. We had one meeting so far, and are havng another n July 27th. We are meeting at Cheptow Garden Centre cafe, as it’s approximately half way between the original members and has good access. You are welcome to join us, if it is not too far for you. There are about 14 of us ,including partners.

Dave

[Tez117 in reply to Pspuser]

This sounds great! Not sure if we can make it on that date as my wife’s due date is 29th July!! How do I keep in touch with this specific Bristol/South Wales group please?

[Bertieandpiper]

Hi

We are in North Yorkshire

[Richard33]

Hi,

Lewes Sussex here. I must do the PSPA Zoom meeting one day.....Shame there are no more face-to-face groups here anymore.

Richard 🙂

[Bodhi17 in reply to Richard33]

Richard I'm in Uckfield!

[Richard33 in reply to Bodhi17]

Hi,

It would be great to make contact. Such a difficult disease and if there is any help I can give.... We are in Chiddingly - bit down the A22....🙂

Richard

[Bodhi17 in reply to Richard33]

Thanks Richard I'll message you. I'm new to this forum malarkey but I regularly attend the Carers' Zoom meetings for our region.

[Dazzle1659]

First of all I'm a newby here! So hello. I live near Swansea

[Tez117 in reply to Dazzle1659]

We are Llandovery. Keen to connect

[Dazzle1659 in reply to Tez117]

I live near ammanford, if you'd like to get in touch

[Ratcliffe]

Hi Millidog, thats a good idea.

Although I am now an ex-carer, I am located in Leicester.

[Goodact]

I am in Perth Western Australia🌏

[OB10]

hi I’m in south Wales